While chatting one evening about my writing work, my husband observed that I make things look much easier than they truly are.
We talked at length about this.
I explained to him that I do not want to frighten people who are newly diagnosed. I also do not want to be ungrateful for all the goodness that has graced our lives.
With further thought, I also realized that in blog writing about lupus, I am convincing myself of the upside of coping. I don't think that is wrong; I have written myself out of some really deep depression episodes.
But, my husband is quite correct about how one sided my representations of daily life can be like with a serious chronic (and currently incurable) disease.
People who knew me ten years ago would not recognize the person I am today.
Physically, I am only about 15 pounds heavier. With lupus, that is not bad at all. I am shorter, the scoliosis is creeping up, and the spine curvature is shrinking my height while squishing my middle. My face is pocked with about eight sores today that refuse to heal, and there are scars left from lupus flares.
I was always a very quick to smile person, and now I rarely do the flash the teeth smile. I can't, my lips rip and bleed.
I was always fussy about my appearance, and took the time to do the whole hair and make-up thing, even for a quick dash to the corner store. I can not manage make-up any more. My skin responds savagely to practically anything that touches it, my hair is dried out with thinning patches from four and a half years of daily chemotherapy pills (or more delicately phrased "immunosuppressives").
I still try to dress nice when going out of the house, but even that has its concessions. I have to wear clothing that will accomodate the fibromyalgia and the constant swelling that goes with the lupus (and the side effects of the treatment regimen). Even shoes must be carefully chosen... my balance is unpredictable.
But, it is not the physical appearance that has changed so drastically. What happens with lupus is usually so underneath the surface of the skin... people are completely unaware of the amount of suffering that comes with trying to live as normal a life as possible.
In my case when the facial sores are under control, I don't look ill at all. You can not see the symptoms by looking at me. You can not see the pain, the shakiness, the difficulty with thinking, and the worse thing of all... the never ending grinding fatigue. And if people can't see that, they do not acknowledge what is going on.
I actually had someone ask me once, "So when will you feel better?"
Like they were asking me how long will it take to get over a head cold. That's just one small example of the regular ongoing challenges of dealing with other people who get frustrated with my health challenges.
When you see someone in a wheelchair, you wouldn't dare think such a thing about the person, because you can SEE the physical hurdles that person must deal with everyday.
I only leave the house about once a month. We carefully plan around any outings because I fatigue so easily. There must be resting up prior to even something like a trip to the movies, followed by sleeping the whole car ride home and crawling into bed for the next day or so.
REWIND.........
Ten years ago I was working full-time in a day treatment program (high stress career) and part-time on weekends as a musician. Evenings were spent with my husband as we rehearsed for stage or dinner theater shows. And we would always be travelling or going on outings to restaurants, movies, or shopping.
I also had energy to keep up with my friends.
We became parents in 1999, quit doing the theater, stayed home more, but still in all... life was very active. I managed the household finances, the housekeeping, and half of the errand running. For a time my husband and I were able to share equally in the child care. We both flexed our work schedules so that one or the other of us was with our son.
That only changed when I decided that I wanted to have the full experience of being a stay at home mom... yes, I had the luxury of having a choice.
My husband describes me as a "burning a candle at both ends" person. I just think that somewhere deep down inside, I intuitively knew my time for a "normal" life was going to be short.
In 2001 my health crashed and I have never bounced back.
The story of that crash is too long for a blog entry.
The friends eventually dried up to only two loyal people. When you have a crisis in your life, you learn pretty quickly who your real friends are... and some people surprise you... both in good ways, as well as the bad.
I didn't wake up one day and suddenly lose everything.
Living with lupus is a shedding of layers. One loss after another... after another... after another.
I would love to find someone who actually DIDN'T get depressed while going through such an experience. It is deeper than grieving.
In grief, there is often some way to find closure. And for more traditional circumstances there are ceremonies involved. In death, there are funerals. Even in divorce, there is a court appointment, there is an official document saying this has happened.
In lupus, there is no place where you can say... okay, this is over.
One day someone with lupus is having a typical lupus day, the next she has had a stroke and lost an intangible part of brain function.
One day someone with lupus is feeling a little worse than usual, the next she is in the hospital and her kidneys have shut down. Twenty-four hours later, she is dead. The doctors never saw it coming.
One day, I had some shaky hands and felt irritable, the next I am in the emergency room with brain scans, shot up to the gills with pain killer with the world's worse headache. Doctors toss about maybe a stroke, maybe a seizure, may be "just the lupus".
One day I am doing just fine, a few hours later, I am dizzy and crash land into the food pantry leaving deep six inch long bruises down my side... and I can't remember how I got there.
Yesterday I did not get to sleep until 4 am because of deep abdominal pain, and a little over four hours later I am dealing with a stomach flu. By evening I have hand tremors, and a migraine so bad I see flashing light, every odor is making me nauseous and I can't sit up. And today I can barely walk about the house, and my chest is congested like someone who has had a chest cold for several days. I have developed a sore throat, and if this isn't better by tomorrow, I will have to dash in to the doctor because a chest cold can flip to pneumonia very quickly with the drug regimen for treating lupus.
I am keeping my fingers crossed that nothing else kicks up. And with this I consider that I am feeling good enough to write. Because this is just a typical lupus day for me.
I have two weeks of clean (thank God!) laundry piled up on the surfaces of my bedroom because I am too weak to fold it. The beds are unmade. I had to cancel the cleaning people yesterday because I was too sick to have them going through the house. I have had to cut back the frequency they can come because my medical expenses are so high. I am wondering how much longer we will be able to afford to even have them stop by once a month.
I couldn't rally round until noon today to manage the getting dressed because the large joint pain is worse than usual today. My son is home sick today with the tummy flu (hey, no surprise there) and he had to help me in the making of his lunch because my hand wouldn't hold steady to spread the peanut butter.
Some of you may be asking, "How are you typing right now?"
My keyboard is on a moveable tray that is able to hold my hands in position, along with a quilt stuffed underneath. I take breaks about every five or ten minutes, and switch to typing with two or three fingers as the fatigue settles in.
I will have to stop very soon, because the spine and shoulder pain are really becoming uncomfortable. If this is a typical day... this entry will be about the end of my "productive" activities for today.
I will stay up and about to be with Little Bear, I think the best we can hope for is climbing on the couch with the pillows and blankets to watch a video or television for the afternoon.
I am usually "toast" by 4pm. By 6pm I am usually bed resting and a typical day means falling asleep before 8pm. If I am lucky, I can get up and about later in the evening. Unfortunately, if I am having a real messed up lupus day, I may not fall back to sleep until the wee hours of the morning. It's either that I am sleeping upwards of 14 to 16 hours a day, or grabbing to about 4 hours of sleep due to pain.
When my husband comes home, he makes dinner, does some of the housekeeping, and devotes his evening to our son. Then he gives me his total attention.
My husband works so hard to put a roof over our heads, to give our child that extra attention needed because of the stress of having a mommy with a disability, AND being my caregiver... he rarely has a moment to call his own.
And he's the reason I am able to write. He is the foundation that this writing work is built upon. He knows I have so few hours in each day to engage in activity... he insists I spend that time pursuing my interests. He is adamant, and I am ceaselessly grateful for this.
So the next time I post a "perky" entry, recall that I am standing on the shoulders of an incredibly supportive spouse, and an incredible little boy who is my son shine. And remember that I am probably writing in bed, in lounge wear, after taking up to eight pills, bundled in a stack of blankets, with laundry tossed about everywhere, a sink full of dirty dishes, a cluttered home, an eternally needing to be vacuumed (again!) rug, and living on half the income we had planned on having at this time in our lives.
And, yes... I have things much, much, much better than the majority of lupus patients I have come to know.
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